Archives

What is happening to me?

It’s been awhile I have been on here, but I have been so fatigued. I had an incident yesterday that really scared me. I was wondering if any of you have had this happen…

I was pulling weeds in the yard. I was also taking breaks so I don’t think I over did it. First I got this feeling on the upper part of my arm. It was a burning feeling and hurt really bad. It then started to travel down my arm. It felt like hot razors were slashing my skin. I thought I was going to have to go to the doctor. After about 20 minutes it went away, but the pain is hard to forget.

After another break I finished up. It took about 10 minutes. I started to feel funny. Unstable and dizzy. I went inside and after going to the bathroom I was feeling worse. I thought maybe I needed to eat something so I got a bowl of cereal and while I was eating my body was getting heavier and heavier. My son was sitting with me, 13 years old, I told him to get the blood pressure monitor. By the time he got back with it I could barely hold myself up. Luckily my arm was on the table by the bowl. That was the only thing keeping my face from being in the bowl. My son got the cuff on and my blood pressure wasn’t to bad around 90/56 or so. It was jumping up and down and so was my pulse anywhere between 85 and 135. I could barely talk or open my eyes. I was slurring badly. The kids tried calling my husband and didn’t get an answer so I managed to tell them to call 911. It took a bit for them to translate what I was saying.

The paramedics checked everything and it all seemed ok, but I couldn’t move or really talk. I knew what was going on, but I couldn’t let them know that my mind was still active.

They got me to the hospital and they ran more tests. As usual they didn’t find anything at all. I’m so tired of that happening. At least this time they saw what was happening. I became more alert as time went on, but I could not move my legs from the knee down and my hands were not reacting properly. After a bit I was able to wiggle my toes a little but not fully and it took A LOT of effort.

After 5 hours I seemed to be back in working order. They let me go home since they couldn’t find anything. I was still shaky but could walk and talk normal. I got home and pretty much slept until a few hours ago. I am still shaky today, but I have finally been able to stay out of bed for a few hours. I do feel a nap coming on very soon.

Also for a few months I wake up and before I get out of bed I shake uncontrollably for almost a minute. I don’t know if this has anything to do with it.

Pernicious Anemia

Pernicious Anemia is an autoimmune disease. I have noticed that many people that have Sjogren’s also have low B12 counts. I always wondered if there was a connection. Now that I know it is an autoimmune disease I am almost sure there is. Most people who have one autoimmune disease tend to get others. In my case I have Sjogren’s Syndrome, Fibromyalgia, and Raynaud’s, and as my doctor told me yesterday Pernicious Anemia.

Pernicious Anemia is an autoimmune disease that attacks the intrinsic factor. This is a type of protein that helps your body absorb the B12 in your stomach. The body needs the B12 to make red blood cells. If you have a B12 deficiency it does not mean you have Pernicious Anemia. There are tests done to diagnose you. Some people just don’t eat the proper foods to get the B12 in their system. These people can take B12 supplements. If you take supplements use the liquid or the ones that dissolve in your mouth. For people with Pernicious Anemia we need to bypass the stomach and make sure the B12 goes right into our bloodstream. I give myself shots to keep my B12 levels up.

I have read that with a B12 count of 600 or less you can start showing signs of memory loss. For many it doesn’t start until around 400. In my case I start to notice it between 600 and 700. Due to our standards many doctors believe that you must have a count of 200 or lower to be considered deficient.  Each person is different.

I was diagnosed with low B12 5 years ago. I didn’t know exactly what Pernicious Anemia was. I finally started doing more research this past week. Even with giving myself monthly B12 shots my B12 levels are still decreasing. I am now down to 303. When I was first diagnosed through a bone marrow biopsy my level was around 290. I don’t remember exactly what it was since it has been so long.

When I was first diagnosed I had really bad shakes, itchy neck (not listed as a symptom but I know others that have this as well), extreme memory loss (brain fog), bruising, irrational behavior, gastro problems, fatigue, ADD symptoms, depression, vertigo, tingling in my hands and feet, shortness of breath, confusion, nominal aphasia (forgetting names of objects), mood swings, insomnia, arrhythmia (fast heart beat), and vitiligo )white patches that develop on the skin). I’m sure there were less severe symptoms that I had but these are the ones that I noticed on a day-to-day basis.

Almost all of these symptoms are back now that my B12 is getting so low again. As I was getting ready for bed last night I had a few things to do around the house. It would pop into my mind and I’d tell my husband that I was going to do this or that. I’d start to walk off and forget immediately. It’s good that I told my husband because I had to ask him every time what I was doing.

In the past I was told I had ADD and given medication for it. It made me extremely hyper. They decided that  it was not the cause of my brain fog. My blood work was off so they thought that I might have had leukemia or lymphoma. That is how I ended up having the bone marrow biopsy. Trust me the simple blood test for B12 would have been much better!

Once I was diagnosed I did 1ml shots for 7 days, 1ml shots every week and then I started them once a month. I felt a difference once my levels started going up. I realized that I wasn’t crazy and that I could be normal again! I really thought I was losing my mind. When I would talk about something and go to say a word like pencil I’d say turtle instead! I would then not be able to think of the word that I was trying to say. One day I was talking to my mom about something. I don’t remember what it was but I do know the word started with a B. All I could say was “blueberries” over and over again. Again this was one of my crazy moments!

When I noticed my B12 levels going down this time around I asked my doctors how this could happen when I was doing the shots. They did not know. I had to take it upon myself to research and try to figure out what was wrong with me again. It turns out that some people just need more injections to keep it stable. I printed up the research and brought it to my doctor yesterday. I did convince her to let me do more shots. My plan was to do the same thing I had in the past but she would not let me do them everyday. I will be doing them every week for a month and then go to every two weeks. We will monitor my levels and see if they are going up, staying the same or still going down. I am hoping they will go up and that I can get back to normal.

 I don’t understand why some doctors won’t let a patient take the shots. They have been told what is normal for B12 levels and they won’t budge on the matter. You can not have too much B12. It can not harm you. Many people have to fight to get the shots. It turns out that my mom has low B12 also. She has many of the same symptoms that I have. She had the test and the doctor told her it was normal. I made her find out what her B12 level was. Just because a doctor tells you it is normal it may not be. Hers was in the 300’s. I had her ask the doctor for the shots and lucky for her the doctor did prescribe them to her.

If this post jumps around I am sorry. I am having trouble concentrating but I did want to get it out there. I have read that many older people who have dementia actually have low B12 levels and by taking it they can be normal again. I hope this helped in some way.

Some helpful links:

PubMed Health

Pernicious Anemia Society

Warm Weather is Here!

I know I haven’t posted in forever. I have been having some flares that have put me down. They haven’t been too bad. A few days at the most. I also got to go on bed rest after my visit to the emergency room. I thought I was going to die. I thought I was having a heart attack it hurt so bad. No, it was pleurisy. I’m not disappointed it is most definitely the better option! LOL! It’s another one of those things that go along with Sjogren’s and Lupus.

Have a wonderful day!

The cold has come…

I borrowed this from Kate.

Winter is the worst time of year for me. It’s not just the weather. It’s also the kids in school and the holidays. There is so much stress. I’m in pain most of the time. I was falling asleep last night and I had to write something… this is what I came up with…

I know who I am but what am I becoming?

Year by year, month by month, day by day I change.

The pain gets worse but my mind… it’s still strong!

I joke. I laugh. I cry.

I try to fill my days so I can forget, but it only reminds more that I can’t.

I pay for everything that I do.

It pulls apart my inner being.

I try to stay strong!

My mind is whittling away bit by bit.

My memory is receding, but my mind still wants to be strong!

I feel guilt. I feel sorrow. I feel emptiness.

My mind is trying to remember to stay strong!

I may wither when things are bad, but my mind will be stronger in the end!

+++++++EDIT++++++

Sorry for any grammatical errors or it not being in the right form. That was what I got from my husband and his daughter… I’m glad they understand me.

++++++++EDIT+++++++

I’m sorry, I know my husband understands or tries to. He is really wonderful and I am truly lucky to have him. He just doesn’t know how to deal with it sometimes. I usually joke about it and he tried to joke with me about my post and I got upset. It hurt my feelings. I’m not always easy to read so I understand. I love you Sweetie and I’m sorry I got upset. I’m just in pain and having a hard time dealing with things lately.

Seizure???

So the doc thinks I’m having mini seizures. From my latest description and the meds I’m on that is the route we are heading in now. I’m on a new medicine, Lamictal. He said it is for seizures and very safe. Not sure what his idea of safe is when the warning says I can get a life threatening rash!?! LOL! What kind of rash is life threatening? I did find that Lupus can cause these types of seizures. My old Rheumy said I was in the beginning stages of Lupus. Does this mean I’m further along now? Blah, all this sucks.

For having a new diagnosis I think I handled it pretty well. I usually freak out and drink too much. I must be getting used to this shit.

So, we now have Sjogren’s Syndrome, maybe Lupus, Fibromyalgia, and Raynaud’s. I wonder how many more I can add before the end of the year.